UPDATE. ERCP tomorrow, then gallbladder removal. Reassurance, advice appreciated

[Womble]

I have been in and out of hospital since February. Had two bile duct obstructions, ended up in shock with dehydration and hypoglycaemia.

I am on the emergency list for gallbladder removal, for which I will only get 24hrs notice. Had an MRCP weekend before last, which found multiple stones in proximal and common bile ducts, so am scheduled for ERCP, with sedation, tomorrow, to clear stones prior to my lap chol.

My cardiologist has added a letter to my electronic hospital notes to highlight dysautonomia and POTS and specifically request saline before, during and after both this and the op.

I have never had surgery before and am ridiculously nervous. I'm particularly worried because I have been having low heart rate readings (42 bpm)  when lying in my left side in bed and that's without sedation, so am scared it might drop through the floor once I'm sedated.

Does anyone have any advice or reassurance they can offer? 

[cmreber]

So sorry you're going through all of this!  I've had three surgeries since my initial POTS diagnosis: knee lap, gallbladder removal, and lap for endometriosis.  I was super nervous with my first one because I had no idea how it would go with the anesthesia, but I have always let them know ahead of time, gotten some extra IV fluids, and I always do fine.  I do take a little bit to wake up, but there have never been any real issues, and I seem to tolerate it all just fine.  My advice would be to take extra care when you do first get up; for me I do get dizzy/tachy/pre-syncope throughout the first day due to the aftereffects of anesthesia, but I usually just go sleep when I get home and be extra cautious to move around the first day (my hubby is always home the entire first day, so make sure you have someone with you!).  I would definitely let them know your concerns going in, especially about the bradycardia, just so they are aware of everything beforehand.  Good luck and let us know how it goes! <3

[Womble]

Thank you, that's very reassuring.

I will be very careful when I first get up and have my sister with me for as long as I need her on the first day.  Ordinarily my husband would be there for me, but not only has he just started a new job where he can't take any leave, his father was rushed to a different hospital a long way from us today and is seriously ill, so he will probably need to be there.

I planned ahead and booked my dogs into boarding kennels, so that's one less thing to stress about at least.

I am sure it will all be fine, but can't help worrying. 

Thank you again for your kind words and reassurance.

[cmreber]

Oh good! They usually recommend someone with you for the first 24 hours anyway, so I'm glad she'll be with you!  Man, sounds like you guys have a lot of things on your plate right now >_<

That was probably a good idea with the dogs.  The less stress the better! 

Also, I found that cleaning the house before, and stocking up on lots of foods that are easy to make helps immensely during recovery!

<3 <3 <3

[Womble]

Yes, life has been a bit crazy just recently.   Between me and my middle son (who has EDS HT) we seem to practically live at the hospital as it is and now my father in law is at yet another one. We are regularly at four different hospitals and his makes five!

I have been sorting the housework this week and the freezer is well stocked, so I think we'll be OK.

 Just praying I don't have any post ERCP complications, as I could really do without an inpatient stay right now. I've packed an overnight bag, based on the theory that, with the way my life has been recently, if I have one ready I won't need it, but if I don't bother I am bound to be kept in overnight.

I've barely slept for weeks now, so am thinking at least sedation will be a bit of a rest!

Going to have a last rehydration drink now, then go to bed.

Thanks again.

[Womble]

ERCP didn't go well.  They repeatedly went into the pancreatic duct, causing pancreatitis and couldn't reach one stone so performed a sphincterotomy (cutting open the sphincter of oddi) and left it, hoping it would leave under it's own steam.  Neither the local for the throat or the sedation worked on me, well the seadation did eventually, but only kicked in an hour after the procedure.  Surgeon was angry the procedure wasn't simple and he couldn't get access to one part of thr ducts and as I wasn't sedated I heard him getting more and more angry about it and then getting uncreasingly brutal with the equipment, which resulted in me screaming (which you'd think might have given him a hint the sedation hadn't worked!).  It also caused severe bruising in my throat making it really hard to swallow for days afterwards.  They told me it would take 10 minutes - it took a full hour.

Pancreatitis came on like a flipped switch 4 hours after the procedure, triggered by them deciding I was ok and giving me a salad sandwich to eat.  I went from chatting with nurses and calling my sister to bring me home, to screaming uncontrollably and begging them to stop the pain in 0-60 seconds.  I then had to wait for the surgeon to finish another procedure before they gave me morphine, so was in horrendous pain for over half an hour with no pan relief whatsoever.  I still have the bruise on my forhead from repeatedly banging it on the side of the trolley while I was in agony.  I was boiling to touch, covered in sweat and having rigours, but my internal temp was normal.  So, the ever wise staff of the endoscopy ward decided to put a fan directly on me, which then overcooled me and actually caused my internal temp to rise to dangerous levels as it tried desperately to warm me up.  That caused all sorts of confusion diagnostically when I was admitted.  Heart rate was 110, normal lying hr for me is 52-58 (which they had been told) but they i sisted it was normal.  BP was 149/90, normal for me 80-90ish over 59-60. Still they kept saying it was normal. 

Unfortunately, my sister and daughter arrived in the waiting room just at that moment. They could hear me screaming and see panicked nurses running all over the place, but noone would tell them anything.  Fortunately, my daughter didn't realise it was me screaming and my sister had her put headphones on and play a game on her console to distract her,  but my sister is pretty traumatised by the experience.

 I was admitted overnight, but for some unknown reason (considering the trreatment for ERCP induced pancreatitis is 4 days inpatient nil-by-mouth with iv fluid and opioids) the next afternoon they decided to feed me half a piece of dry toast and a couple of mouthfuls of jelly then send me home.  By the time I got home I was already deteriorating.  I struggled on trying to just sip water at least, but even a sip caused horrible pain.  Ended up hypoglycaemic and dangerously dehydrated, so you can imagine what that did to my POTs.

Two days later I was rushed back in by ambulance, with my poor, terrified, 8 year old daughter sat in the front with the driver.  

Finally, I am just home again after 5 days of saline, morphine and paracetamol infusions and just starting to eat small amounts of jelly and fat free soup.  While I was i , the hospital kitchens were unable to produce anything fat free other than jelly that was, despite me being on a ward of other f/f gastro patients.  I was the only one that refused to eat their high fat offerings and was labelled awkward for refusing creamy tomato soup and cream of vegetable soup, while the others (in with fatty liver, gallstones, pancreas issues etc,) tucked into the likes of fish and chips followed by gooey choc brownie and custard.  First meal I was offered (with a big board above my head stating fat free clear foods only) was vegetable lasagne and chips!!!

Gallbladder removal has had to be put back 6 weeks while my pancreas heals and I try to regain some strength.   I am now terrified to have this done, given the failure of the sedation and painrelief and ensuing post procedure complications this time.

I got somfed up of repeating my normal baseline obs to every nurse and dr and trying to explain that their parameters for 'normal' do not apply to dysautonomia patients.  It's downright dangerous and made them miss vital signs that I was deteriorating.  What is the point of taking regular obs if you judge everyone by the same parameter AND ignore trends up or down that suggest a problem? 

Even had an A&E (ER) Dr tell me pots is just a bit of a fast heart and nothing else and that I didn't know what I was talking about when I tried to explain.

[corina]

I'm so sorry this happened to you. My mom had the same procedure (ERCP) and developped pancreatitis. It's extremely painful. Sending healing thoughts your way!

 

[cmreber]

Oh I am so sorry all of that happened.  That is awful!  I never had to have the ERCP, but yikes!!!  I hope things start improving for you <3

[Guest ANCY]

I'm so sorry you had to go through all that, made me cry to hear how awful they treated you. Some members of the medical field need to wake up and pay attention, especially when dealing with an unfamiliar condition. I hope the next time around they will treat you better. Did you let the staff know you were dissatisfied? I don't know if you have them, but we (my mom and I) will speak with a patient advocate when I'm not getting proper care. I went through major surgery and was left overnight with no pain meds from 5 pm to 6 am so I certainly know how it is to feel helpless and in so much pain, I'm sorry that's what happened to you.

 and the Will they not put you under full anesthesia for the gallbladder? Under full anesthesia there is a Dr completely devoted to watching vital signs and making sure you're safe. I have had conscious sedation and full anesthesia on many occasions and they are two very diffrent things. 

Just a thought... before my mom and I had our gallbladders out we both found it easier to chew on ice and try popsicles to maintain hydration and give a little sugar boost. 

Will be praying g for you and hope you feel better soon!

[Womble]

Thank you all. 

I am finally starting to feel a bit better. My pots symptoms are still awful, but I have managed a couple of pieces of toast, so finally working my way back up to solid food.

Unfortunately, complaining about your care in the UK at best gets you nowhere and at worst ends up with you getting a black mark on your records labelling you a difficult patient, which makes drs even more dismissive in future. 

Yes the gallbladder removal is a full general anaesthetic, but after all that's happened, I can't help worrying if I'll be one of those people who the anaesthetic doesn't work on, so they feel everything, but can't move or let anyone know.  Having felt every painful second of the ERCP, with them ignoring my screams, I can't go through that again.  Silly I know, as it's ridiculously rare, but it was already a huge fear of mine, without the awful ERCP issues.

On reviewing my discharge notes I have discovered the rather interesting fact that I have two gallbladders! I find it strange that noone thought to mention this to me.  From what I've read it shouldn't be a problem re laparoscopy, but does make it more likely they may have to convert to open surgery than a typical removal and it does need to be done by a Senior Upper GI Surgeon?  In the UK you don't get an appointment with the surgeon to discuss the op. They literally just see you on the ward just beforehand, to get you to sign the consent.  They also regularly use gallbladder removal as laparoscopy training for junior docs, so I am going to contact the surgeon whose list I am on and see if I can arrange a pre-op appointment to discuss my concerns.

I just want it all done and over with now, so I can concentrate on rebuilding my strength and leave it all behind.

Also found out that if I had left it any longer to call, my blood sugar was so low by the time the ambulance got here, that I would have become unconscious, which is a scary thought, as I was alone with my three kids, who all thought I was having a sleep.  I am so grateful to my GP for calling an ambulance as soon as I started speaking to her on the phone.

(Ancy, thank you for the ice pop suggestion.  I have found sorbet a real help for hydration and blood sugar and also have some frozen orange juice popsicles.)